10 am saw us waiting in front of the residence Inn ready for another physio appointment. We saw the shuttle bus pass by, as now we have consigned ourselves to having to get a private taxi to and from the hospital and any other location that we need to get to as we cannot get Dana back on the shuttle bus until she is strong enough to weight bear and she’s far to heavy to just pick up and place her in the shuttle bus.
Joshua turned up again in his familiar cream coloured Chrysler, he’s our regular driver and always on time and courteous and his cab is always immaculate. We found him when we fist come out of having the SDR operation and realized we needed a taxi that could take Dana in the taxi in her wheelchair.
We board and are soon at the hospital. We are on tender hooks, for today we should have the splits and we need them for the weekend. The past 48 hours have taken toil on our backs and joints as we have struggled with transferring Dana to and from her chair to the toilet and bed and any other place that’s not her wheelchair. We have been afraid of overstretching her heel cords as we were warned the first day we needed to be careful.
The splits will enable us to keep Danas heel stabilized.
We arrive at the physio department and soon we see Mike who makes his way to us. He informs me that he has spoken with the office for the orthotics team and the lady he spoke with could not assure him that the splits will be available in our session today. My blood starts to boil and I feel myself starting to get angry. I quickly calm myself and think positively that we still have today before everybody effectively shuts for the weekend.
Blaire our physio for the day then appears and we proceed with her to where we will be having our session.
Dana starts gently and its soon becomes apparent to Blaire that Dana has been working hard and her strength in her legs are returning. She is able to get a good range of stretch on Danas hamstrings, and Blaire suggests that we can do some walking which she will ensure is safe for Dana. This doesn't stop Dana saying to Blaire when being stretched 'I'm in spasm and now my muscles have gone into shock' Blaire just laughs and says she must start a board with kids sayings, this one she said would be top of the list.
Blaire starts to move the equipment around and asks Dana just to use her feet on the floor whilst sitting on the bench and move up a bit. Dana starts to do this and all of a sudden lurches forward off the bench towards the floor.
I see Dana start to fall and although I’m about five feet away dive to try and catch her. I manage to break her fall and stop her from careering into the treadmill, and I fall awkwardly on my knee.
Dana is in bits and now in tears, we get her back to the bench, My knee is throbbing and a large bruise is appearing...I’m now concerned and fraught Dana has hurt herself and damaged something. We cuddle her and perform a visual check, she appears to be ok, we ask her if she’s ok and she tells us yes.
We get her quickly to perform some standing to check that everything is ok, Danas scared but we tell her she needs to ‘get back on that horse’ otherwise she will lose confidence and we need to get her in a positive place.
She listens and performs a couple of sit to stand exercises and tells us everything is ok and nothing hurts…….phew!
The physio session from that point really goes out of the window. All of the sudden Mike appears with a chap who has come to fit Dana’s splits. We all cheer. The chap then goes about fitting the splits and making adjustments to ensure they fit well. Mike then disappears and then reappears with arms full of t-shirts that he has promised which says ‘ Selective Dorsal Rhizotomy, St Louis Children’s Hospital’. These seem to be really what it says, been there, done that…now have the T-Shirt!
We then spend the rest of the session getting advice from Blaire on split usage, and protocol. We are now armed with Long leg splits for walking, ankle splits for when the long leg splints are discarded after 6-8 weeks, night splits and knee immobilizers for night time and a head full of knowledge on what we should be doing. I make notes as the time tolerated will be increased daily.
We leave the session with a feeling that we have achieved and learnt many things but have not really progressed with Dana’s physio.
Now I feel more satisfied that we still have four weeks to work with Dana in and out of physio. A lot of parents have had the hamstrings and heel cords lengthened and only had a week to work on the physio before going home.
I realize that this would be really difficult and we need for Dana to maintain the focus on her sessions in and outside the hospital.
We get back to our hotel to drop off all the equipment we now have, the sun is shining, its 90 degrees and hot and were stuck without suitable transport to get Dana around. We are also too far to walk anywhere. We know we need to go and get new shoes now for Dana’s splints tomorrow and make arrangements with Joshua to pick us up at 11am.
Role on tomorrow…It’s the weekend so a few lazy mornings, some fun and physio at ‘home’.
No comments:
Post a Comment